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Metro Matters;Raising Hopes For Parents Of Disabled

This is a digitized version of an article from The Times’s print archive, before the start of online publication in 1996.
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FOR the first time in months, Judy and Stephen Goodhue may allow themselves to enjoy a holiday weekend. That is because, thanks to the State Legislature in Albany -- yes, that State Legislature -- it looks as though the Goodhues will not have to worry about the care of their profoundly disabled son, Jason.

Jason and about 120 other young adults have been in limbo for up to a year because New York was threatening to stop paying for their care in institutions out of the state.

Despite the chaos in Albany over the budget, both chambers have approved a "rescue" bill to put an end to the threat. "Parents have been hanging by their thumbs," Mr. Goodhue said. "Now, we're waiting to see what George does."

Legislators from both major parties expect Gov. George E. Pataki to sign the measure. If he does, as parents see it, half the battle is won. New York still wants its children to come home. And some of their parents are resisting, contending that the state does not have the appropriate institutions for them.

LISA has cerebral palsy and is developmentally disabled. When she was 7, New York sent her to live at Woods Services in Langhorne, Pa., because the state did not have an adequate residence for her and the law obligates the state to give all New Yorkers an education. That entitlement ends when people turn 21.

The state and localities agreed to share the cost of caring for those over the age of 21 until 1999, when the state would take over. But last year, New York City withdrew its financing, with Westchester and Suffolk counties following, and parents feared they would have no way of paying the cost of their children's care -- as high as $85,000 annually.

If the Governor signs the bill, the concern of the parents will shift to where their children will live out their lives. State officials cite many reasons for wanting them in New York, from a desire to return disabled people to the community, to bringing them closer to their families. Moreover, some young adults are still living in residences meant for children, and would be better off in adult homes in New York, officials in Albany say.

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But it is clear that the strongest impetus for bringing young people back home is financial. The Federal Government picks up half the bill for those in-state institutions but assumes none of the cost for New Yorkers in out-of-state institutions. The same for the 100 or so people a year who reach 21.

THIS would argue for the state to seek a waiver from Washington, allowing the state to get Medicaid reimbursement for New Yorkers cared for out of state. State officials reached yesterday, the start of the long holiday weekend, did not know if New York had ever filed for a Medicaid waiver.

Parents worry about their children, not Medicaid formulas. "Woods is home for Lisa," Ms. Bavaro said. "Our kids may be disabled, but they are capable of understanding, learning, of forming relationships. And they have done that there."

The state has sent her to look at a few potential homes for Lisa. One was on 34th Street in Manhattan, a coeducational residence in an elevator building. Worried about her daughter's safety, she rejected it as unacceptable. The same for a home in Cooperstown, over five hours away. It takes her about two hours to get to Woods.

A parents group is suing the state, contending that the institutions are inadequate or dangerous. Deborah Sturm Rausch, spokeswoman for the State Office of Mental Retardation and Developmental Disabilities, denied the accusation, saying the office's "primary mission is to assure that the highest quality of care is given to all the people they serve."

The Goodhues, whose son lives three hours away at the Melmark House in Berwyn, Pa., said they would love for Jason, now 27, to move closer. "But not at the sacrifice of care he has now," Ms. Goodhue said. Nor has the state offered an alternative residence anyway.

Steven Sanders, the Assembly bill's prime sponsor, said that while some parents are right to insist that their children stay where they are, he thinks most state placements are appropriate. He added that he was gratified that the bill was passed, even if it did take a lawsuit and bad publicity to do it. "Sometimes it is easier to identify with the plight of a few people than with multitudes," he said. "You can understand what a family is going through."

A version of this article appears in print on July 4, 1996, on Page B00001 of the National edition with the headline: Metro Matters;Raising Hopes For Parents Of Disabled. Order Reprints|Today's Paper|Subscribe